Lymphoma returned what next

Hi Seekhelp and a warm welcome to this corner of the Community although I am sorry to see you joining us and sorry to see the reason why you are here.

I am Mike and I help out around our various Lymphoma groups. 

I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low-grade non-Hodgkin lymphoma (CTCL) eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ my be different from yours I do appreciate the challenges of this journey rather well.

What exact type of Lymphoma do you have…?

As I have an incurable Low Grade NHL……..I have Relapsed multiple times over my first 15 years….. in fact over those first 15 years the longest remission I had was about 9 months before I had to go back on the treatment treadmill.

I will highlight that you used the word ‘IF’……. from my long experience having had positive scans/biopsies to say that my Lumphoma had kicked off again and I had to have more treatments…… I had many more negative scans/biopsies as once the results came back nothing was found that was Lymphoma related….. scare tissue, fatty lumps……. and yes other non cancer related health issues that were dealt with.

So based on my long term mindset - until something is found that is confirmed that is Lymphoma - it's not.

But if it is a relapse then there are many lines of treatment available….. to the point that my last treatment in 2015 put me into remission that is holding strong to this day…… yes my type of Lymphoma is incurable but it’s fast asleep so I won't be going around kissing a princess.

Any help or advice  I would appreciate 

I again Clecker I put up a reply on the other post you put up.

Hi Hilander,

I have same kind of NHL as you think it was stage 3 when diagnosed. After main Chemotherapy which worked really well I was given 2 years of maintenance injections these to worked really well. The last one was September 2023. I noticed a small lump at this time. I then saw consultants in December the lump had more than doubled in size by then.

I have got my head round if it has come back my only slight worry is the reaction from more Chemotherapy  when my body not had much of a break from it.

I also suffer from diabetes and lymphoedema  in my arm which add to my problems.

Comforting to know from your story that you can keep fighting #StayPositive.

Hi again Seekhelp and first a healthy and happy 2024 to you and everyone on this group.

When you say you have the same type of Lymphoma as me……. are you saying you have one of the few types of rare Cutaneous T-Cell Non Hodgkin’s Lymphoma (Skin Lymphoma) (CTCL)….. my one is called Mycosis Fungoides (yes some name)

or

Have you one of the many different types of Low-grade non-Hodgkin lymphoma?

This can make a difference to how things will progress.

Over my main 2 years treatment (Sep 2013 to Oct 2015) my chemo running total must be over 800hrs… (you can see my full story in the link at the bottom of all my posts)

It is amazing what the body can endure and recover from…… you are unfortunately a passenger at the moment and you just need to trust in the ‘system’ as they will search out the next best options and get this all back on track.